Be still my restless legs

by Ruth Nichol / 22 December, 2014
Drugs are helping some people whose twitching limbs prevent sleeping.
woman sleeping

After decades of disrupted sleep caused by restless leg syndrome (RLS), Helen Clark has finally found relief. It comes thanks to a combination of two drugs that quell the unpleasant sensation in her legs, which used to strike most nights making sleep virtually impossible.

The Auckland grandmother spent years trying to get rid of the feeling she describes as being like “a piece of elastic that someone is pulling then letting go”, including asking her husband to stand on her legs. “At times I wished I could just cut that elastic; it’s like torture. People think that restless legs is a minor thing, but it’s not.”

Now, by taking low doses of two drugs that boost her dopamine levels, those days are behind her. “It’s brilliant – my legs don’t bother me and I just go to sleep.”

RLS is a neurological disorder that causes an unpleasant throbbing, gnawing, pulling or creeping sensation in the legs, and an uncontrollable urge to move them. According to Andy Veale, the Auckland sleep specialist who oversees Clark’s treatment, most people with RLS also experience periodic limb movements – frequent involuntary twitching or movements that disrupt sleep. “These movements can be quite subtle, but we pick them up when we get people into the sleep lab.”

Up to 15% of people suffer from RLS, most of whom have intermittent bouts they learn to live with. Between 3% and 5% of people have persistent RLS, in which they experience disabling symptoms at least two nights a week. Of those, says Veale, about a third are so badly affected that, like Clark, they need medical treatment. “Some people become so desperate they’ve attempted suicide.”

The symptoms strike when you’re sitting or lying down. RLS can ruin a night out at the movies and turn a long-haul plane trip into more than the usual nightmare. But as anyone who has experienced RLS knows, it’s the effect it has on sleep that’s most distressing.

The symptoms typically begin as you start to relax in the evening. They intensify once you go to bed. On a bad night, you can spend hours pacing around the house, or applying hot packs to your legs, or cold packs, or gels containing menthol or peppermint oil – anything to alleviate the maddening sensation stopping you from sleeping.

Finally, at around 3.30am, your legs start to feel normal again. Veale says that the easing-off of symptoms in the early hours of the morning is a classic characteristic of RLS. “No one knows why it happens, but people often get their best consolidated sleep in that three hours before waking.”

Just as mysterious is what causes RLS. In about 20% of cases it’s linked to low iron levels, which may be one reason that women – particularly pregnant women – are twice as likely to be affected as men. Veale says people with the condition should get their iron levels checked; he recommends supplements for those with levels in the lower third of the normal range. However, it’s important not to self-medicate. “It’s really easy to get iron overload, which can cause other problems.”

RLS also tends to run in families, and the symptoms can be exacerbated by taking anti-depressants or antihistamines.

The condition cannot be cured but it can be treated. Options for serious cases include taking sleeping tablets or prescription painkillers. But as Clark has found, a more effective treatment is taking drugs that increase dopamine-related activity in the brain. According to Veale, these drugs can also be used on a one-off basis by people with less severe RLS to help them cope with things such as a long-haul flight.

The drugs are the same as those used to treat Parkinson’s disease, but there’s no link between Parkinson’s and RLS. “The drugs work on completely different parts of the brain.”

As with many drugs, they can have side effects, including something known as augmentation, in which the symptoms of RLS return at an even more ferocious level. However, Veale says careful monitoring can reduce the likelihood of this happening.

“The treatment is very successful, which is quite seductive, but it’s important not to over-medicate. You need to keep ringing the changes in terms of the drugs you use to stop any side effects.”

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